Thursday, January 29, 2009

Today marks my 6th month on the list. I was listed on July 29th, 2008 for a double lung transplant at UNC. I can't believe the time has passed so quick. It seems like just yesterday my Pulmonologist told me words that I had dreaded hearing for years. That she felt that I should be reevaluated for a transplant by the team. She contacted the transplant center and got the ball rolling from there. And from there, the ball never stopped rolling. In fact, it rolled down the hill so fast it crashed into the wall that is called "my life."

It's been a major adjustment in some ways and in others, not so major. Pulmonary Rehab became mandatory, which wasn't that big of a deal b/c I was already attending Pulm. Rehab at the local hospital here. But along with the Pulmonary Rehab came appointments with the transplant team every 3 months, mandadory tests needed to gauge my elligibility (some of which were very unpleasant - thank god I only need to take them once a year) and of course the transplant support group meetings. (which I had loathed during my first go-round on the list). Not to mention, I have to be available to be contacted 24 hours a day. So that means I now have a little pager that I have to carry around with me everywhere I go, along with my cell phone. But, I don't mind that, it just makes me look all official like :)

Anywho, starting all over with the support group was an unhappy chore at first. I remembered the way I hated going when I was a teenager and how uncomfortable I was being there with all those older people. I would sit there and stay silent the entire time and when I did speak, I would get so nervous I would turn red in the face and studder. There was absolutely no one else my age around for me to bond with or make friends with. And to top it all off, the man who ran the group was an utter douchebag. And that is me being nice. I could have called him much worse!

But, now is a completely different experience. I actually don't mind going to the meetings now. I don't feel different from anyone else b/c almost everyone there is around my age or older. And it's good to meet others who have gone through the process and are doing great. Also, I've made some good friends there that I look forward to seeing every other week. So, all in all, the support group meetings have been an informative and somewhat enjoyable experience.

So in review, it has offically been 6 months today that I've been listed. I feel relatively well, or as well as I can for now. My coordinator told me the other day through email (after I asked) that the team had had some offers of lungs for me so far, but they either weren't viable or were given to someone else who was sicker. What all this means I don't know. Could it mean that my time is going to come soon? Who knows? I'll contemplate this again in another 6 months. Unless, I already have my new blowers by then. :)

Moving along and speaking of support group, last night Justin and I took my Mom's car to Chapel Hill for a meeting. Before the meeting we met Vickie and her family at Ruby Tuesday's for dinner. Mmmmm. Boy was it tasty. But of course, we were running late, so we had to leave early. (before I was even finished eating, might I add) We ended up leaving the restuarunt at 6pm and not making it to the meeting until 6:20pm. Which meant that we were 20 minutes late.

I'm glad we went though, b/c I got to meet Dr. V. The newest transplant surgeon at UNC. He was super cool and nice. Seems to really know his shit, which, I find comforting, considering he may be the one with his hands poking around inside my chest cavity.

After he finished speaking he looked at me, in front of everyone and smiled and said, "Hopefully I'll see YOU soon." I was like, "Yeah, hopefully sooner than later" But, what I REALLY wanted to say was,"Yeah, No shit, buddy! Throw a bitch a freakin' bone, why don't cha!" :)

In a totally unrelated horrible event, Duke was cheated out of a win over Wake Forest last night. They came back from being down 11 points to tie the game, but unfortunately those filthy Wake fu**ers managed to score 2 points right at the buzzer! That's okay.....they will get what's coming to them. Just wait.

Monday, January 26, 2009

I'm home from Chapel Hill, once again. From yet, ANOTHER, failed sleep study. I swear, why do they keep making me do these stupid tests? I never can fall asleep in a good amount of time. Then once I am asleep, I can't ever stay asleep long enough to go into REM sleep (which is where all the magic happens) before I wake up again. Therefore, they never can tell if anything strange is going on or not. Pointless.

But, before Mom and I reported to the hospital last night, we went out to dinner with my friend Victoria and her kids. We went to Lonestar in Durham and had a great time. The food was awesome. I ate so much that I probably gained another 16 lbs just from the chicken alone. I had a salad for starters with caesar dressing. And for the main course, I ate grilled bbq chicken with a loaded baked potato on the side. (minus the sour cream) Last, but not least, for dessert I had NY Cheescaked with chocolate syrup drizzeled over it. MMMMM.

I have to return on Wednesday to Chapel hill for support group. I'm looking forward to going b/c for 1. A friend of mine, Candace, who was on the list, got her transplant recently. And I'm hoping she will be at the meeting. :) And, 2. Justin is taking me, so that will give us some alone time together away from his parent's house. And 3. We will maybe get to meet Victoria again for dinner before the meeting, if they aren't busy moving. Good Friends and Good food, who can ask for anything more??? :)

On another note, You may be noticing that I gave my blog a total face lift. What do y'all think of it? When I first saw the background on the website I found it from, I thought, "Pink Cheetah print? Ummm, that's a little much." But, then the background I originally picked didn't look right. So, I thought I'd try this one out and it ended up growing on me. I especially like the pink ribbons on each side. It's very pretty! And I think the font colors I chose compliment the background nicely. Feel free to leave me comments in the guestbook or for this post and let me know how you feel about the changes! :) Feedback is welcome!

Well that's it for now. Below are some pictures from dinner at Lonestar last night. Enjoy.

Wednesday, January 21, 2009

Stop crying...I know it's been a little while but I finally remembered. Not that I've been super busy, but I've been going out a lot more lately at night and that's when I usually do my blogging. The boyfriend and I have been doing a lot of stuff together.

Last night we went over to his friend Dax's house. (well I guess he is a friend of mine, too?) Or to Dax's parents house since that's where he's staying right now. But anyway, we went over there and played Wii. It was fun. Although half the time I ended up having to entertain his young kids while he and Dax played. :-( But it was okay...well it was alright.

I felt sooooo stupid, b/c the kids wanted to play Candyland. (Dora the Explorer version of course) and can you believe, that I had forgotten how to play!!! I had to re read the directions!!!!!! Oh man, that was sad. LOL THEN to top it all off, they both beat me!!!!!!! I couldn't believe it!!! A 5 year old and three year old.

Candyland can suck it!!!!!

So it snowed here the other night. It was really pretty and also was the first time I drove in the snow. Justin and I went to the movies to see My Bloody Valentine 3D. (3D is SOOOOO overrated) And when we came out of the movies around 9:30pm, it was already snowing! We got less than and inch but in Chapel Hill and Durham they got a shitload!

I had a follow up appointment with Dr. Roy today here in town. It was pretty much pointless. Except I did get the diabetic sugar meter that I needed to check my levels after sleep epsiodes. And for Free!!! Yay! But aside from that it was definately a waste of perfectly good insurance.

Sunday is the sleep study appointment in Chapel Hill. Justin is going to take me in my mom's car. (SURPRISE SURPRISE) We are hopefully going up there early enough to have dinner with some transplant pals of mine and then going to the hospital for the rest of the night. I'm looking forward to dinner but NOT the study. :-( I guess Monday i will have another fun filled day of picking sticky shit out of my scalp and hair, for the 3rd Time!!!

Then hopefully, maybe, on Monday on the way home we might swing by Duke and hang out on campus. I want to show Justin the Chapel because he's never been. And we want to go to the gift store and cop some cool Duke stuff!

I am seriously feining to get a Nintendo Wii. And that is not good. Because I have $300 in my savings account just sitting there. I am trying to be a good little oxygen girl and save it for bills or something I really need it for. But I can't stop thinking about playing the Wii and how fun it is! Someone Help!!!!! :-(

Thursday, January 15, 2009

Once again it's that time to sit down and read the ramblings of the one they call the Queen of the Oxygen People. :) Nothing new is going on with me really. Except I'm feeling kinda poopy today. I'm not sure if it is because I had gone 2 days without my blood pressure pills (b/c I kept forgetting to pick them up) until today or if it is because I had to get up at the butt ass crack of dawn this morning to go to Salisbury. Or if it is because I may be getting sick. Or maybe it's a combination of all 3. Who knows? But the end result is that I don't feel all that great.

My throat feels as if it may be getting a little sore, although not quite there yet. And I'm tired as hell. But like I said, that may be from lack of sleep since I didn't fall asleep until after 2 this morning and then had to get up at 7am. And due to lack of my blood pressure pills, my head has been hurting all day and I just feel overall like BOO.

BUT despite all that, I still went and bought my friend Julie a gift for her birthday. While I was in the store, I also bought Justin a cute little trinket. It's a little pig called a "Good Luck Pig." It goes back to the old days in Germany, where people were considered rich if they had a pig b/c they could feed their whole family on one pig. So, people in Germany often say they, "Had a pig" (Except in German), meaning they were lucky! So you give someone the little piggy and it supposed to bring them good luck and help them become become successful! :) So when I saw the pig at the check out counter, I couldn't resist buying it for him b/c I knew he had been sorta down lately and I wanted to cheer him up and bring him some good luck!

I was very disappointed b/c Justin and I didn't get to go to Chapel Hill yesterday like we originally planned. B/c he woke up sick as a dog and it was a bad idea to go to the support group with everyone there. It would be too much of a risk that others would pick up his germs and get sick. Not to mention that I would pick up his germs as well from being that close to him. So we didn't go. :-(

But, I did call in to the meeting and participated via the conference phone. There was a speaker there from Carolina Donor Services. He talked about how to go about writing to your donor family after you receive the transplant. It was pretty insightful I guess. But a little boring. I took some notes, even though it was all pretty much common sense!

The real exciting part of the evening was the announcement that there had been 2 lung transplants in a week's time! There was one on Friday, the 9th and then another one on Tues the 13th. How exciting! Also, the girl that got her transplant on Friday was a girl I met at support group that I had emailed back and forth for a while! She and her family are super nice. Maybe she will be at the next support group meeting.

I just downloaded this cool blog editor program through Mozilla, called ScribeFire. So I figured while I was sitting here at the desk, I might as well try it out, right? Pretty cool. The only thing that I've found that I don't like so far is that the Add video feature is directly related to You Tube. So, I guess that means if I want to add a video then It has to be on You tube, or I have to add it to you tube myself. So, that sucks.

Tomorrow I go to Chapel Hill again for Support Group meeting. Justin and I are driving up there in my mom's car. Hopefully we'll get to eat dinner with Victoria and her kids afterwards. Well this post is getting rather boring so I'm going to sign off. Besides, I'm freezing and if I start moving around a little by cleaning off this desk, then maybe I'll warm up some!

Monday, January 12, 2009

I hope everyone had a great weekend and are all geared up for a new week. BOOO. :) My weekend sucked except for the time I got to spend with Justin on Saturday evening at his parent's house. We hadn't seen each other in almost a week, so it was definitely time. And it was time well spent. There's nothing like cuddling with the one you love. *sigh*

On Wednesday I have support group in Chapel Hill and my Mom actually said that Justin can take me up there in her car. :) YAY! I'm looking forward to it. It will give us some tiem alone together, plus we may be able to have dinner with my transplant buddy Victoria and her kids. (by the way, check out her son Garran's two blog pages, there are links under Bloggin' Buddies.)

On Thursday Mom and I are driving to Salisbury to the Social Security office. I have an appt. to discuss the possiblity of me getting other benefits in addition to my SSI check that I get every month. B/c my step dad is retired, I can draw off of his Social Security retirement. Also, b/c my father is deceased I could possibly draw off of him. I"m not sure which way it will end up or how much I'll get if any. I guess I'll just have to wait and see! But i know one thing. I could definiately use the extra money!

Nothing major to report right now. I'm feeling alright. Just having cramps, due to that pesky little monthly problem. Aside from that, everything is cool, I guess. I've been slack lately on my rehab, but I'm starting a fresh slate today. No more laziness. The holidays are over. I've gained too much weight and I need to keep my body strong for the transplant. It's time to get off my ass and quit procrastinating!

Friday, January 9, 2009

I'm back. I went to Chapel Hill yesterday for my return appointment with the sleep specialist. Two vials of blood and one EKG later, they STILL have yet to know what is causing these sneaky mysterious sleep episodes I keep having. So their solution? ANOTHER SLEEP STUDY!!!!!!!! Are they insane? PLUS...if that wasn't retarded enough, they told me to and I quote, "call a friend when I wake up from one of these sleep episodes, that has a blood sugar meter, and ask them to come over and check your blood sugar. " What the hell?

Needless to say, My mom was furious after hearing this. She says I should be glad she wasn't in there with me or she would have cussed the Dr. out. According to Mom, that was very unprofessional for a dr. to tell a patient. To depend on a friend driving over with their blood sugar meter. Why don't they supply me with one, if they want me to check it so bad? What bullshit!

Anywho's...what else did I learn yesterday you ask? Ohhh..only that I've become even MORE of a FAT HEFFA!!! I'm now officially at 116 lbs. Pretty soon I'm going to be walking around in a moo moo b/c that's all I'll be able to fit on over my fat belly. :-( And I'll have to start using my scooter again..but b/c I'm too fat to walk, not due to my breathing. The only good thing about gaining all this weight is that my ass is starting to fill out a little bit. I can actually feel it jiggling a bit when I walk. But that still isn't nearly enough to erase the horror of the growing tub of lard that is now known as my pony keg of a stomach. At least if I had been drinking I'd have an excuse for it's appearance. And at least I'd have been enjoying myself from the buzz that I'd get.

Okay okay...I can't lie...I have been enjoying myself immensely as I've been shoving all this food down my piehole. But now, as I look at this belly that slightly hangs over the top of my jeans, I'm questioning whether or not I have a problem. Can I stop eating so much? And if I can, do I really want to?

After all, there are only so many things that I can physically do that I find enjoyable: Sex, Eating and Sleeping. I'll let you guess which one of those 3 things that I'm not getting enough of. HAHAHA :) So maybe I should shut the hell up and quit complaining about my 'muffintop'. As long as I haven't acquired a F.U.P.A., it's all good. :)

Gotta go - Pizza is almost ready! lol (P.S. For the definition of a "muffintop" and "F.U.P.A.", look them up on urbandictionary.com)

Sunday, January 4, 2009

Things have been pretty slow around here lately. Nothing exciting has happened in relation to my transplant. Which sucks, but oh well, what can I do? Not a damn thing but sit here and pass the time, waiting. So that is what I'm doing.

BUT - something non transplant related has happened that is SUPER exciting. :) I got a new cell phone! And with it a new contract, with a completely different company. I was on my parent's plan through At&T through the local phone company. But, yesterday when he informed me that I, "need to cut back on my texting." Because I made over 900 texts last month. (Even though we have unlimited texting with the plan therefore, it didn't cost extra)

That was just one more way that he could try and control me. He didn't give a shit that it didn't cost any extra, he STILL demanded that I cut back on my texting. WHY? B/c he wants to control me, and everything and everyone around him. Well, fuck that. So, I promptly told him that that was fine. That I would just march my little ass right on over to the Verizon store and get my own damn plan. Which he said, "Good." I don't think he believed I would though. But--

True to my word, I filled up my portable tanks and drove my little ass right on over to the Verizon store by Walmart. I got my own plan. And I was SO excited to learn that I didn't have to pay a deposit. I thought for SURE b/c of my credit that I would have to pay one. But I didn't! Oh Happy Day! :) So now, after buying my phone, I still have some money left over to pay on my bills. :)

AND my phone is SUPER COOL. I was going to get a Blackberry until I learned that I would have to pay a monthly data fee, in ADDITION to my regular bill. So i said, screw that. So, instead I ended up getting the LG Voyager. Which has touch-screen AND a full keyboard that flips open on the side of the phone. AWESOME :)

So that's my exciting news. Hope everyone had a wonderful weekend. I'm off like a prom dress!

Thursday, January 1, 2009

I hope everyone had a fun and safe New Years Eve. And I hope someone drank a whole bottle of champagne in honor of me, since I'm not able to drink anymore, due to me waiting for the lungs and all. It wouldn't be good if they called me for my transplant and I was face down on the floor with a champagne bottle clinched tightly in my hand. :)

My New Years Eve was great. The best one in a really long time, perhaps ever. Justin and I went over to our friends Dax and Merrit's house. They were having a little get together. It was good to see them again. We hadn't seen them in quite a while. Their parents were there and brother and sisters, etc. Plus a few friends, including us. Oh and don't forget all the kids. lol 4 of them. 3 under the age of 5. (yikes!) and then one precious little 4 month old.

The kids were cute but running wild the whole night. But, i guess thats how kids are. lol Although they were cute and sweet, at one point I found myself whispering in Justin's ear, "Let's not ever have kids." lol I love kids, they are cute...but I'm glad they aren't mine right now! :) But Justin will be a wonderful father, he's so great with little ones.

The best part of the whole night for me, was when the ball dropped and it was officially 2009 and Justin and I shared a New Years kiss. My first New Years kiss ever!!! The last few years, he was never with me on New Years. :) So i'm glad he finally was.

So overall, I had a wonderful New Years Eve. We ended up staying over there after everyone else cleared out, for an hour or so. Justin and Dax played Tennis on the Wii while Merrit and I talked. But boy I was tired as hell when I got home!

RE-Introducing....

I'm a 29 yr. old female who had a lung disease called Bronchiectasis for 17 years. On Father's Day, June 21, 09, I recieved a double lung transplant at UNC Hospitals in Chapel Hill, NC. Weeeeeeee I can breathhhheee!